This morning I went to the funeral of a little boy I delivered two and a half years ago. I have taken care of his mother for quite a few years as I also delivered his older sister. He died after a brave and ferocious battle against rhabdomyosarcoma, the most common soft tissue sarcoma in children. The cancer, however, was much more ferocious than his treatment.
I came early to the chapel of the funeral home to sit with my office nurse, who had updated me often with this wonderful boy’s photos and stories from his mother’s FaceBook. It was “too close to home” for me, to look at his photos as I was in his parents’ shoes in 2001, when my son was battling stage 4 neuroblastoma. Photos of children, during cancer treatment, look very similar, hairless, bony and skinny figures, enormous eyes and, mostly, striking smiles. These little patients, unlike adults, are warriors who fight their battles without thinking about death and dying. The end of time is not on their daily agenda. As children, they learn to live their moments.
The pediatric oncologist who led the little boy’s treatment team was asked by his family to give a speech. She drove the crowd into tears, many tears of her own, telling us stories about this brave boy. Physicians should often be grateful to their patients. Through their suffering, we find truth about life, death and priorities. We learn to treasure each given healthy moment as good health is impermanent. The oncologist told many charming stories of how this little brave boy loved music, that of Michael Jackson and James Brown. She read statements from members of his medical communities, from the front desk secretaries to physicians as far away as the Mayo Clinic, from the medical assistants to the technicians who started his I.V. or drew his blood. He, like other cancer patients, had two communities in his brief life, that of his family, and the one in the hospital. His death left enormous sadness and joy in both communities, the paradox of loving and grieving for someone.
There were so many stories, as if he had squeezed a lifetime into his last 16 months. We saw photos and heard his voice from video clips played on a big screen in the chapel, how he tried to sing along with one of James Brown’s songs, waved at a trash pickup truck, ran into a bush in front of his house with his older sister. In the calamity of one’s life, who would have thought such mundane children’s activities would forever be ingrained in a parent’s memory?
My husband and I took my father out for dinner later in the evening. He will be turning 96 years old in March. His mind is still so lucid, his judgment clear, although he is walking more slowly. We talked about the little brave boy’s death on the ride back to his home. My father, like all of us, has always been perplexed at the order of life. Why would a child die so young, after spending half of his short life fighting such a painful battle? Is it fair for a child to die so young, while someone in his nineties, deaf and blind, is hanging out at a nursing home?
I can’t explain all that complexity about life and death, as if there should be some sort of justice in when we should leave this world to yield a seat for someone else to get on this train of life. The wise pastor from a church in Germantown, however, gave me comfort and a clear vision on how I should be doing with the time allotted to me. He did not, thankfully, tell the grieving parents that it was God’s will that this brave little boy had to leave so soon. He did not preach how God only gives us what we can bear. Maybe, like me, he believes things happen, and life is unpredictable. Worse things can happen to the best people.
The wise pastor, instead, reminded us how to live fully, using this little brave boy’s life as an example. He cited three things we can control: the choice to be happy, impact we can make regardless of age, and what to do with our time.
The little brave boy mastered the art of living. Like him, we have choice over our day, whether or not to be happy. He fought his battle and lost, but he chose to be happy each day he was living. Maybe he was wise enough to know he was running out of time. Aren’t we all running out of time?
Impact, the wise pastor said, has no boundary for age. The little brave boy, in his illness, brought communities together. There were numerous churches who gathered to pray for him. People from all races, religions, walks of life “dropped their differences” and came together to raise funds for his treatment and help his parents. In the little chapel packed with people of all ages, with so many standing beyond the door, he brought all of us together on this sunny morning to watch his brief life in motion on a big screen, and to acknowledge, like the story about the firefly told by one of the speakers, that this little brave boy was indeed a firefly with a brief but shining life. His life and suffering taught his communities lovingness and kindness.
Lastly, the wise pastor reminded us of the essence of time, how our allotted time in an “opaque box” should be spent wisely. Time is irreversible and limited. Are you living your life and doing what you love? Are you living your life without regrets?
May we all learn from the brief journeys of fireflies or little warriors like this loving boy, to live our minutes and seconds with passion, to chose the path of happiness, and to make a positive impact as he did for his multiple communities he had created. It is not, after all, how long we live that matters, but how well we live it.